["... and found no shade". Coping processes of patients with erythropoietic protoporphyria]

Coping with disease was studied in a group of ten persons suffering from erythropoietic protoporphyria (EPP), a chronic congenital metabolic disorder that manifests itself in extreme sensitivity to ultraviolet light. Sufferers experienced medical prophylaxis as ineffective or counterproductive. The BEFO technique (Berner Bewältigungsformen BEFO, 3 dimensions, 27 categories) was used in assessing the coping strategies. The sufferers' interviews were evaluated on the basis of transcripts. Stressors and respective coping strategies were defined and analysed for each person individually. Sufferers are confronted with their disease virtually every day. For each stressor the set of strategies tends to be specific either to the disease, the environment or it may reflect personality traits. Most of the sufferers did not develop an effective mode of adaptive behavior, i.e. coping with the pain/stigma dilemma, until they passed their third decade. While it undeniably presents an intense personal challenge, coping with disease must be seen to include major societal aspects as well.